My daughter Caedence was born on January 26th 2005 and was diagnosed with Type 1 Diabetes on December 26th 2007. Our lives changed drastically that day. I would like to tell you what my nights have been like since, however I need to give you some basics on her treatment (it is a treatment as there is no cure yet). Caedence is on a pump that gives her medicine every hour (called a Basal), this is usually what we can reduce or increase if her glucose numbers are either too low or a bit higher then should be. Whenever she eats, she must off set the carbs that she eats with more medicine (called a bolus). If we do not know the exact carbs in something (Buffet's and BBQ's are the enemies now), then we have to guess at how many carbs she is eating. She receives her insuln through a patch that is given by injecting a VERY large, thick needle into her belly or lower back. It leaves behind a small rubber tubing that stays in her body in order to give the medicine as she eats or goes through her day. This is a better situation then we had in the beginning with a minimum of 8 shots a day.
Many people think that they know what it is like to have diabetes or to have a child with it, but I do not think that anyone can truly know what it is like until they walk in our shoes. I will give you a glimpse of what it is like for us since that day in December 2007. Robbie and I have a plan that works well for us. Sunday-Thursday I wake up during the night as he is working. On the weekends, I get to sleep in sort of. I wake up almost every time that he does when he checks her. This is something in me that I can not stop as I am always afraid now. Below is just a few of the nights that we have had since her diagnosis.
We check Caedence's glucose before we go to bed @2130. If she is fine, then all is good until I wake up @0200 to check her again. If we are lucky and her numbers are good, then I get to sleep until 7 am when it is time to get ready for school. Robbie wakes up early for work at @0500 and checks her again. This is a typical GOOD night for us, but remember that this is EVERY night when her numbers are good.
Now I will tell you about a bad night. We check her before we go to bed and she is 84 (on the low end, but not low enough to get a juice to bring her up). I give her a temporary reduction in basal to try to get her to go up naturally and set my clock for an hour away. At 2230 I check her and she is at 80 (still going down), so I give her another reduction in the basal and set my clock for another hour in hopes that she will go up. @ 2330 I wake up again to find her at 75 (still not low enough to get a juice) so a lower reduction is necessary. You may ask after the 3rd check why I get up every hour? If she drops too low, she could die and that is not an option for me. So at @0030 I check her and she is still at 75. She has not gone down, but she is not going higher so she could still go low. I set that clock for another hour ahead. At @0130 I wake up to find her down to 70. She is getting 50% reduction of medicine (basal) that she would normally get now and still going low. I can not figure it out, so I lower it to -60% and set my clock again. It is now 230 and she is starting to rise at 76, but she is still not low enough to need a juice, so @330 I test her again. Keep in mind that each test is a prick of her finger that will effect her later in life. She is now at 83. Starting to rise a bit more, so I continue with the -60% reduction for the next few hours. I am starting to feel a bit more confident so I am able to sleep a whole 90 minutes before my clock goes off again. By now, I have completely lost my mind from fatigue and forget that Robbie is waking up to check on her, and I go into her room to check that she is just over 100 finally. I have had quite a few of these nights and I will continue to have them. Robbie asks me how I can survive with such little sleep as it takes me a good 20+ minutes to fall asleep each time that I wake up to look in on her. He wonders how I can be so functional while checking her, but the only answer that I have is that the alternative is NOT happening. I will NOT lose this precious gift that we were given.
If you think that was a tough night, I should probably tell you about the stomach flu that she had before Thanksgiving last year. We checked her @930 at night and she was good. At @ 2330, we are woken up from Kat screaming in their bedroom. Caedence was vomitting all over the place. Robbie cleaned the room as I helped Caedence. We moved her mattress into our room and brought a bucket for her. We began the glucose checking and she was down to 87. As usual, this is not low enough to give her anything, so I gave her a reduction on her basal. She took a few sips of water and laid down. About 20 minutes later she began to vomit again. I checked her numbers and she was 62. This was low enough for me to try to give her something, however about 10 minutes after drinking the juice, it came back up. For the next 2 hours, she would vomit about every 30 minutes even when she did not drink or eat anything. I kept reducing her medicine, but her numbers were not going up and she was dropping. I began to call the Endocrinologist for help. She told me to continue doing what I was doing with the reduction. For the rest of the night, she was ill every 20-30 minutes. I was not able to sleep for more then 5 minutes at a time and there was nothing that I could do to stop her pain. I began to check her glucose every 20 minutes in hopes that she was going up. She was not going up, and was in fact continuing to drop. I checked her reduction and she was at -100% by then and not getting any medicine at all! She was dropping and not able to keep anything in her to raise her up. By about 0600 the Endo told me to bring her to the hospital. Robbie had gotten more sleep then me, but was unable to drive. The mom in me kicked in and I drove with very little sleep to the emergency room where they were FINALLY able to stop the vomitting. Through the use of an IV, her glucose began to rise. About 6 hours later, she was released to go home with good numbers, but still not quite right.
Now healthy people can feel better a day or so later after having a night like this. However a diabetic will have issues for a lot longer. For the next 3 weeks, her numbers were so off that she missed quite a few days of school. At one time, the Endocrinologist told us to give her regular Coke to see if that would bring her up. She was getting no medicine at all, regular coke and it was not bringing her higher. This is not the normal, but it can happen with illness and diabetes.
As I said, this is our life now and there are times when we break down. Everyone tells us that Caedence is VERY smart, always happy and always willing to help. We look at her and can not believe that she will have this for the rest of her life. This is not something that she will grow out of. We can only sit back, take care of her as best as we can and hope for a cure. There is nothing else that WE can do as her family which is EVERY parents nightmare. I would gladly take the finger pricks (8+times a day), patches (one every 3 days if we are lucky) if I could so that she would not have to live like this until a cure is found. This disease was given to our youngest baby and now we have to keep an eye on the other two children as well.
This disease is growing more common, especially in children. We are participating in the Walk for a Cure in Virginia Beach in hopes to raise money and awareness of this disease. It can strike anyone and any child. Help us raise money to find a cure!
Anyone can donate to the team or even join the team. All we ask is that you join in the fundraising as well to help find a cure. I hope that none of you ever have to go through what we and millions of other parents go through on a daily basis.
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